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I ‘met’ a man called Darrell on a Facebook group for people with a jpouch. Social media is brilliant for this, for the ability to speak to people all over the world with the same issues as you. Darrell has been a real inspiration to me, I LOVE his attitude. He is so strong, honest and positive, he writes with such openness and passion and it is a pleasure to be his Facebook pal.

He wrote a bit of a tongue in cheek post today about life with a j pouch and it had me howling as it is all so true, and so with his permission I thought I would share it here for you all.

1. Every bathroom trip is an adventure.

2. Stomach gargles while in bed and you have no idea if that’s going to haunt you later.

3. Using wet wipes as an adult and feeling no shame.

4. Having no idea what effect the food you are putting in your mouth, at any given time, will have on your ass later.

5. The ability to make such an enormous amount of noise in the bathroom stall that you know the person next to you is wondering if a gorilla is shitting beside them.

6. Knowing beyond the shadow of a doubt you are the toughest person in any room you enter.

7. I love the fact that I enjoy every moment more than anyone I know because I have been to the abyss.

8.Understanding the digestive tract better than many medical students.

9. Being the only person in a 20 mile radius who has shat every color of the rainbow and not feared for their life.

10. When your friends or family complain of indigestion, heart burn, acid reflux, stomach viruses, constipation, diarrhea or said, “I’m not sure I should eat that, it could upset my stomach”, and all you can do is look at them and think, “Pussy”.

If you follow me on twitter or Facebook you may have seen that I’ve been having a few problems with my j pouch recently. After everything had settled a little, I was going to the toilet around 4-5 times a day which is pretty good for a pouchee. But for the last few weeks I have gone downhill and I’m currently going to the toilet 15-20 times a day and I’m having periods of bleeding.

I’m taking 4 loperamide a day and it’s just having no effect. I went into hospital last week for a flexible sigmoidoscopy/pouchoscopy and the results came back quite normal with a tiny bit of inflammation but not enough to be causing problems. So next step is to try and figure out what us causing the problems.

I have been tested for coeliac disease and I’m awaiting the results from that. I am going back into see Mr Brown on Thursday in clinic and we will see where we go next. Through email we have discussed a little plan of a low residue diet and using fybogel and then discussing an MRI to see if there’s any inflammation elsewhere in my system and use of medication.

So there’s the medical side… From a personal perspective I am struggling. I’m feeling quite down about this setback, it’s difficult to feel like I am back to square one. I’m going to the bathroom as much as I did during a flare up before my bowel was removed! It’s tough to feel like this after a years worth of surgeries and recovery.

I have been away this weekend with the marvellous Responsible Fishing, an arts group that I work with. We put on an event called Tidal Gatherings in Sandsend with stone balancing, sand and land art. It was fantastic but dealing with running to the toilet 20 times a day was very hard work. I had an accident once and waking several times a night was exhausting both physically and emotionally.

It makes me feel a little removed from the situation when I’m like this. Like I can’t be fully engaged with the people around me as I’m constantly thinking about my guts and where the nearest toilet is. I feel like I need to just keep going and can’t let the team down but at the same time that I’m doing a half a job. All in all I’m just feeling quite sad.

I woke early one morning from our caravan and walked with Timm and our dog out to see the sunrise. I tried to find the silver lining by thinking about how I would have missed this gorgeous sight had I not been sleeping so poorly. That early morning silence was a really lovely time with just me and the husband and it was perfect.

I’m worrying lately that having pouch surgery was a mistake. It is so hard at the minute and I kind of miss my ileostomy bag. Though it had it’s problems it did make running for the toilet fairly defunct! I was informed that recovery from pouch surgery can take up to two years and so I suppose that I need to have some patience.

I’m still really happy under Mr Brown and the team in Sheffield. These problems are unfortunate but I do feel like I’m being heard and that I’m being cared for really well. And so I will just have to see how I go, I will update after Thursday to see what happens next.

Butt Burn… can you say those words without a little snigger? I’m not talking about having a bit of a dodgy tum after a curry, I’m talking about the pain and discomfort that people with a j pouch suffer from. Let me explain a bit more.

When you have had your large intestine removed, a pouch is formed from your small intestine and this is attached to your rectum. This means your digestive path is an awful lot shorter than usual and the acid from your stomach may not be fully neutralised by the time it reaches your bum. Your large intestine is also responsible for removing the water from the food we eat, without it, your poo becomes liquid rather than a solid poo. That combined with the smaller ‘storage’ space inside means that most people with a pouch go to the toilet multiple times a day.

The combination of these things can result in butt burn. A severe irritation of the skin around your bum that results in a painful burning sensation.

So what can you do about butt burn?

Well firstly many people recommend flushable, sensitive toddler wipes instead of toilet paper. The skin is very delicate and if you are going at least 5-6 times a day with a liquid poo, the amount of rubbing and wiping can further irritate the skin.

Some people use a bidet to wash themselves after a poo. For me this seems like too much of a faff. But when it’s been severe, I have gone and sat on the bidet for relief! I have also heard that some dry their bums off with a hair dryer. That’s not one I have tried but if it works for you, then go for it!

Barrier Creams are my weapon of choice. I was given the comfeel barrier cream by Coloplast when I left hospital but also use Metanium and Bepanthen which are two nappy rash creams that help. Metanium is very good, but it’s very yellow and I find it stains my skin and clothes a bit. Bepanthen is fab too, but I do find it a little too greasy. Which is why I end up using a combination!

Controlling butt burn through diet is not as simple as you’d imagine. It is not a case of if you eat spicy food, you will get the burn. I can eat Indian food absolutely fine, but eating oranges is agony (I still eat them now and again though as I love them!) Certain foods can cause problems one time but be fine the next and so it’s important to not remove one food from your diet forever as it can be changeable.

Some people recommend eating a lot of carbs (bread, pasta etc) to bulk up the stool. The thinking behind this is that the thicker the stool, the less wiping and the less irritation.

“A sitz bath or hip bath is a bath in which a person sits in water up to the hips. It is used to relieve discomfort and pain in the lower part of the body. It works by keeping the affected area clean and increasing the flow of blood to it.

A sitz bath may be created simply by filling a bathtub with some water and sitting in it for a few minutes. Alternatively, a large basin can be used. There are also special devices that fit into toilet bowls. Sitz baths may either be warm or cool. Some people find alternating between hot and cold water soothing. Sitz baths may be filled with just water, or substances such as salt, baking soda or vinegar can be added.”

The above comes from Wikipedia I haven’t used a sitz bath or bowl, but a proper bath is always quite soothing and worth a try.

I suppose the biggest thing is to speak to your GP or consultant about your butt burn. It’s not something you should be embarrassed of, and they may be able to give you a solution. I hope my post has been a little helpful in your plight for a less burny bum hole.

I know things like this can sound like a joke, but the reality is that dealing with these things every day can becomes a source of anxiety and really affect both your spirit and day to day life. I write about these things to bring the subjects that us pouchees have to deal with to the table. I hope my post can make it a little easier to deal with.

I’ve been to see my lovely consultant Mr Brown today and all is good! I have a huge grin on my face because currently my pouch is working brilliantly, my next check up will be in May 2015 and there is talk of discharging me… I have been under a consultant since 2004!!!

I am 12 weeks post j pouch surgery and I’m going to the loo about 4-5 times a day (which is awesome in case you were wondering!), I know that may sound a lot for a normal person but for a pouchee it is pretty damn good. I have little urgency and can hold it in when I need to go to the toilet. And I’m having no accidents at all! I’m eating pretty much what I want with a few exceptions.

I still have times of massive fatigue, especially if I allow myself to get dehydrated which is really easy to do these days as I have no colon. But as long as I keep my fluid and salt intake up, I’m doing really well. It feels amazing as since the operation I have had many many times where I questioned why I had done it.

Life seemed so much tougher than with my ileostomy and I thought I’d made a massive mistake. But since my last admission to hospital and the big dose of antibiotics, everything has improved hugely! I know life will never be ‘normal’ again, but currently all is good in the world and I couldn’t be more relieved.

So today I am feeling blessed and happy. Thank you Mr Brown for making my life so much better.

Love Sam x

Thank you to the very awesome RoofTopsNYC for my brilliantly Love is Love tshirt xxx

So yesterday morning I saw Mr Brown in clinic and after examining me, he thinks I have pouchitis. He said I need antibiotics, fluids, blood tests, X-days and a pouch scope. And so I was admitted back to the Northern General.

I had blood tests, X-rays, a night on the wards and a pouch scope and though my white blood cells were high there was not much else showing any problems and so I have been sent home with a course of antibiotics to knock anything nasty on the head.

My first jpouch scope was a lot easier than anticipated. I was TERRIFIED going in, I’ve had plenty of colonoscopies and flexible sigmoidoscopies but this is my first since getting the pouch. I didn’t have sedation and it was all over in 10 minutes. It was a walk in the park compared to a full colonoscopy, a little uncomfortable and the worst thing was the air pumped in. I had a bit of gas and air but it was all fine.

Releasing (ahem!) the air was interesting… It’s already loud enough when I go to the loo now, expelling a load of air that been pumped in sounded pretty fucking amazing. If I weren’t so embarrassed I’d have called out to the rest of the ward “DID YOU HEAR THAT?!!!”

I saw the inside of my pouch which was odd but good and Mr Brown said it looked ‘beautiful’ – I had no idea what the appropriate response up that was so I thanked him… Then giggled.

He is my favourite doctor, it’s always a pleasure to see him and I trust him implicitly. Though I’m still concerned as to the cause of the pain and struggle to poo, I’m happy that he wouldn’t send me home if were worried.

So I’m home and hoping that the antibiotics will make me feel better. I’m still having quite a bit of pain and will have to wait and see how the crapping goes as I haven’t eaten in 24 hours so haven’t been.

Apologies for not replying to any messages (most only came through once I got home!) The internet signal in that hospital is ridiculously bad. It’s like the dark ages!!!

I’m having some problems with my pouch and so I’m going back to see my consultant tomorrow morning.

I can’t pass anything without a lot of pain, straining and basically feeling like I’m about to pass out.

Lots of pain in my belly and bottom and also passing what looks like coffee grounds which can be a sign of bleeding higher up.

I’m really exhausted and fed up but hoping that I’ll get some help tomorrow.

I’m feeling really sorry for myself right now. I’m regretting the operation and feel like my illness and recovery is just a massive burden to everyone. It all feels pretty sucky at the minute but I’m hoping that things will seem brighter soon.

I had my four week check at the hospital yesterday with my awesome surgeon Mr Brown. Everything is looking good!

At some point I need to learn when it’s not ok to make inappropriate comments though. He needed to *ahem* examine me and so a nurse was present. She was asking me to assume the usual lay on you left side, knees up position when I said “yep I’ve been here before!”
“Oh” she replied sympathetically “have you had problems and had to come in after surgery?”
“Nah I’ve just had years of this so I’m used to literally being in this position”

Anyway, Mr Brown was happy that everything seemed ok with my pouch. But when we discussed my bowel habits (actually is it still correct to say bowel habits? You know what with me missing my large bowel…) he wasn’t happy with the amount of times I’m going.

It’s currently around 15 times a day, it’s very sudden and urgent and I’m having continence issues. I’m having to wear pads to deal with that and it makes me feel like absolute shit (excuse the pun) My confidence is very low and I feel embarrassed and really fucking sad about it.

Anyhoooo Mr Brown asked how much loperamide I was taking, the answer is I’m not because no one told me I should be or prescribed anything. He wasn’t happy about that and said I should have been taking it. So he prescribed that and was hopeful that it would solve a lot of the issues I’m having, which would be AMAZING!

He then asked if I knew someone who runs a certain shop in Sheffield, I said I didn’t think so but that I did run this blog so perhaps they had read something here. He said they had told him that and so he’d better do a good job incase I wrote anything mean about him. I assured him I had only put lovely things about him!

It was a bit weird to know people are talking about this place and that it’s got back to my surgeon!! But it’s all good and I can hand on heart say, without any persuasion from him, that Mr Brown has been fantastic from the beginning. He always comes across really caring and like you are important, I’ve never felt like just a name on a sheet and his care has been amazing.

Going from 8 years at Rotherham hospital to asking to be moved to Sheffield my care had improved so much. Both the Hallamshire and Northern General (with the exception of bitch nurse from last year!) have been awesome and I can’t thank them enough.

You know you have a good doctor when both nurses and other patients have nothing but good words to say about them. When I speak to other IBD patients in Sheffield, everyone gushes about him and one nurse in hospital said “Ohhh he’s like a fine wine, he’s just getting better with age!”

So Mr Brown, if you happen across my little blog (because let’s face it, most people would DEFINITELY google themselves if they heard they’d been blogged about!!) you are doing an awesome job and I thank you from the bottom (fnarrr!) of my heart for your care over the last year.

I have to say loperamide isn’t the instant cure I was (stupidly) hoping for, it made me feel quite queasy last night and there was no impact on the amount of times I’m going to the loo. But obviously it’s something that’s going to take time to get in my system.

I had a pint of Orange juice yesterday as I was craving for it but it was not good. At least I’m assuming it was the juice! It passed thru my system in about an hour and left me on the loo about 10 times in an hour. OJ is now on my pouch kill list…

But I have to keep reminding myself that it’s early days. I’ll keep plodding on and I’m sure things will get better soon.

For me to get blogging. Apologies again for my absence, I really don’t know what to write about as I can barely understand how I am feeling right now, but I feel bad for not documenting this part of my journey and I know Ill probably regret it if I don’t. I am also so grateful for all the loving messages of support and want to thank my readers from all over the world who have emailed me asking how I am as Im not posting!

I suppose Ill take it from the beginning. I went into hospital on the 14th May at 7am and was taken through to the pre op ward where I had a few tests, got my surgical stockings and changed into my hospital gown. Soon after I was taken through to the theatre and my epidural (for post op pain relief) was put in place, it was a great team and we had a laugh as I was in there. I lay back on the table as they pumped the drugs through and my last memories are of the mask being over my face and breathing deeply.

I awoke around 4 or 5 hours later from my pouch surgery feeling very nauseous but glad to be alive! I had been having nightmares that I just wouldn’t wake up from surgery. I was really tired and the nurse came and said that Timm was on the phone, I believe I spoke to him but I can’t remember. I told him to sort out the kids and to come and see me once I was back on the ward rather than coming to the post op ward where he would only be able to stay a few minutes.

I slept and puked for a few hours and was really out of it before going up on to the ward. Timm and my mum visited and I felt ok, still quite sick and just exhausted. The surgery had been a success and as I pulled up at my gown and looked down, I saw that I no longer had my ileostomy bag and my stoma was gone! I had tubes everywhere, a catheter in my bladder, the epidural in back back attached to a drug machine, I had drips in my arms, a drainage tube sewn into my stomach and a drainage tube up my bum…

The first few days passed in a bit of a blur, I was on a lot of different drugs to deal with my pain as well as not being able to eat. I slept a lot and allowed my poor battered body time to recover.

I had a reaction to an anti emetic drug called cyclozine, I felt paralysed and couldn’t speak or communicate. The nurse saw this and sat with me, explaining that I was having a reaction but that I would be fine once it passed. After an hour or so the physical feeling wore off but for several hours I was left feeling completely confused, I didn’t know where I was, I thought I was dying and I couldn’t explain to anyone what was wrong. I lay there crying silently for hours, not knowing what was happening. Luckily it wore off after about 6 hours and I slowly started feeling normal again. Absolutely terrifying!!

I was put on a different anti sickness drug to deal with my nausea and vomiting, I say vomiting but as I hadnt eaten for days at that point it was more dry heaving. I also was given an acupuncture needle to help, it was a tiny needle placed into the inside of my wrist that had a small sticker and a plastic nub that I was to leave in and press when I felt sick. I can’t explain how it worked but I can say that before I had it I was having anti sickness drugs every 6 hours. After I had it I had two doses in the next 5 days!

After a few days they removed the catheter, the drain from my stomach and the epidural. The drain in my bum had to stay in for 9 days… It was awful. It was a tube inserted into my anus and into the newly formed pouch, its job was to allow any waste to drain from my internal pouch into a bag allowing the stitches on the pouch time to heal. Three times a day I had to pump sterile water into the tube and then drain it out. Honestly, it was the worst thing about the whole procedure. The tube was extremely uncomfortable and meant I couldn’t sit upright nor lay flat on my back so I was bed ridden and had to turn from side to side every hour or so. It was embarrassing too to have this quite large tube coming from in-between my legs and having to carry the bag around with me when I went to the toilet and back.

Im glad to say that the nurses and staff were amazing this time, I had no problems at all like the last time I was in. There was especially one nurse named Sam who just went above and beyond, she was so caring and easy to talk to. She took the time to speak to you and was just an amazing nurse. Im going to make sure I let the hospital know just how much I appreciated their care and support.

I wasn’t allowed any solid food for the whole 9 days that I was in hospital. 9 DAYS YO!!!! The first few days I had a drip, and after that I had to drink plenty of fluids and I had these fortisip drinks that I was supposed to drink three times a day. I think I had 4 or 5 in my whole stay as I couldn’t stomach them.

I was quite emotional while I was in hospital. Between the pain, lack of sleep, lack of food, the drugs and the emotions of dealing with surgery I was a bit of a mess. I cried quite a lot and felt ever so sorry for myself. There was a bit of a heat wave while I was in and Id see people coming in, in summer clothes and smelling of the outdoors and would silently cry to myself. Im aware this sounds a bit pathetic but it really got to me!

One day I asked Timm to make sure I had no other visitors, I was so chuffed that my friends and family visited me but that one day I just felt totally overwhelmed and just wanted to see my husband. He said he was coming at 2pm for visiting but he was running late. I lay there watching the clock tick by, logically knowing that he must just be caught in traffic, that he would have called if he couldn’t make it. But my mind started working overtime.

‘He’s not coming’ I kept thinking. ‘He doesn’t want to see me, how can I blame him? I have this horrid tube and Im so weepy and useless. He’s just not coming’ I worked myself into such a state that all I could do was lay there and cry. And then he appeared. A measly 20 minutes late, not a big deal at all but I had wound myself up so much that I just wept.

But you know, my knight in shining armour came and held me tight. “You thought I weren’t coming” he said and I just sadly nodded. He walked off and came back grinning with a wheelchair. “Come on Mrs C, we’re off on an adventure” he said. He bought me one of those donut cushions so I could sit and then helped me into the chair. He wheeled me through the hospital out to a little garden and we just sat quietly in the sunshine holding hands. Him on a bench and me in the chair, blanket tucked over me hiding the bag. For the first time in a week I smiled and it felt genuine, everything else, the pain and the fear, just disappeared for that hour. It felt like it was just me and him and that everything was going to be ok.

On Friday 23rd May I was finally allowed the tube in my ass to be removed, it was such a relief. I could have cried!!! And then I was allowed home! It was so good to get home to Timm and the kids and into my own bed. I have been home for three weeks now and the recovery is slow and steady. Physically I have recovered well from the actual incision wounds on my stomach, they have healed really well and I am pleased with them.

The first week I was home I had to go to the toilet and empty my bowels every two hours, I had an alarm set to remind me and this went on through the night too. The next week the time was extended to three hours so as you can imagine, I was just exhausted. Getting up through the night was tough as once I was up I was finding it difficult to get back to sleep. The reason for this is to make sure as little pressure as possible is put on the stitches in my pouch. The next week and from then on I am to hold the urge to go to the toilet for as long as possible to start the long process of training my pouch to stretch and hold waste so I don’t have to go to the toilet constantly. This can take up to two years…

Last Sunday I started feeling unwell, I had to go to the loo A LOT and by Monday morning I had been over 50 times in 24 hours. I was exhausted and terrified something had gone terribly wrong. I called my stoma nurse who recommended speaking to the specialised nurses at the hospital, they said I needed to see the GP as soon as possible. I saw the GP who oddly enough used to work with my consultant and surgeon Mr Brown! She was lovely and examined me and said she believed it was a virus that was going round. I was so relieved and came home to plenty of fluids and rest.

So a month after surgery I am now going to the toilet around 15 – 20 times a day, this is mainly because it is quite difficult to actually open my bowels, it feels so different to before and it may take 3 or 4 trips to the toilet to feel like I am ’empty’. It is very tiring going so much and I feel down about it. I have to wear a pad in my knickers ‘just in case’ which makes me feel like absolute crap. I feel really embarrassed talking about it, which is odd for me as I usually am happy to talk about anything but I think because my self esteem and confidence feel at an all time low, it is hard for me to open up and talk about it.

I know it is early days and I was warned that this recovery process is very long and drawn out, it takes a lot of time for the pouch to work properly and so I know I just have to be patient and accepting that this is how it is right now. But honestly, I am feeling very low. I feel sad, scared and weak. Im worried that I have done the wrong thing, I feel like I am ill with Ulcerative Colitis again and that I am back to where I was before the first surgery. I feel quite panicky and anxious a lot, like Im on the verge of tears. And Im finding it very difficult to open up and talk about it to those around me.

I am so lucky to have such wonderful, caring people supporting me. Timm, as ever, has been amazing, my awesome friend Caroline has been here looking after me and the kids, cooking, cleaning and just being there for me, my mum has been here cooking for us all and looking after the kids. I have had visits, messages and calls from so many fabulous friends and family and I feel so grateful.

But part of me feels like I need to be bubbly and happy, I don’t want to be a Debbie Downer whinging on and on and I find myself just saying “yes, Im fine!!!” to the question of how am I because Im worried that if I open up and say that actually I feel horrible that I will be letting people and myself down. I know that sounds mental, and if I think about it logically I know that it is absolutely fine to be feeling rubbish, I just had major surgery! I also know that people are there for me.

I think I find it difficult to voice my feelings because I honestly don’t really understand them myself. I just feel that under my day to day smile, there lurks this gloom. A heavy hearted sadness coupled with a chest thumping panic. I feel worried at the thought of being in public or around too many people, I feel safe here at home with Timm and so Im worried about leaving the house. We went to a shopping centre last week for an hour and it was quite scary but ok as I was with Timm, I was exhausted by it and went straight to bed afterwards.

I just need to keep plodding on, take each day at a time and accept that right now, things are shit. But as I recover, things will get better each week. This is a lonnnnnngggggg post so have a shiny star if you have managed to get this far! Thanks for reading and I will make myself keep on blogging, because no matter how difficult it is for me to get these words down, I know that I feel better for it and hopefully I can help someone else too.

Much Love

Sam xxx

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I have had a couple of pre op dates through and we are definitely working towards my pouch surgery being in April. On 26th March I have to go in for a test of the muscles in my arse (nice!) and I have my pre op date for 9th April (Happy birthday Timm!)

The first test is called Anorectal Manotmetry, it is a test used to assess how well the muscles and nerves in and around your rectum are working, so that doctors know they are strong enough to deal with the pouch surgery. I will also have an ultrasound.

“The test uses a device that looks like a small thermometer with a balloon attached to the end. This is inserted into your rectum and the balloon is inflated. It may feel unusual, but it is not uncomfortable or painful.

A machine is attached to the device, which measures pressure readings taken from the balloon.

During the test you will be asked to squeeze, relax and push your rectum muscles at certain times. You may also be asked to push the balloon out of your rectum in the same way that you push out a stool. The information is sent to the pressure-measuring machine, and gives an idea of how well your muscles are working.

The balloon can also be inflated to different sizes to determine when your rectum feels full. If the balloon is inflated to a relatively large size but you do not feel any sensation of fullness, it may mean there are problems with the nerves in your rectum.”

I am not looking forward to this test as you can imagine, but after ten years of Ulcerative Colitis I have had so many tests and doctors looking in my butt that little embarrasses me any more!

The next appointment is for my pre operative assessment where they go through consent and make sure Im informed, do blood tests and any other tests that need doing. Ill be screened for MRSA and they will just go through the information I need to know about when to go nil by mouth, when and where to come in to hospital etc. I am not sure what the time between pre op and surgery actually is, I had a google and some people say its days before and others say it could be a month or more. But my surgeon has said my op will be in April so we’ll just have to see.

And so that is where I am up to, everything is being booked and we are steaming ahead. Ill most probably have a pouch in the next month and to be honest I am terrified. But that is for another post as I can’t get those words out right now.